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Discussion Starter · #1 ·
Since I went into this last and worst flare after trying to stop the MTX (with my RD's consent) I started getting worried about the new symptoms and I'd like the input of you veterans who may have similar experiences.

My flares encompass my entire left side including my face, but now the whole left half of my head is involved and the right side is just getting a hint of the same issues which are: an earache, and slight pain in the temple and/or jaw area. The earache and the head pain is what worries me. I'm deaf in my left ear already and trying desperately to make sure the right ear stays healthy. No one knows if it's the lupus or not that damaged the left ear.

Anyway, I worry that what's going on in my head could start a stroke or something equally devastating. I started a related post when I was feeling really depressed with worry, but now I need to learn about your symptoms. How many of you have headaches and/or earaches that you know are from the lupus? How many of you have an odd sensation in your head and/or face? I'm just trying to determine what's really a cause for concern and what is just an annoying lupus headache or earache. I guess I want to hear that I can have these symptoms and not necessarily have a stroke or go deaf or blind. I know it's no guarantee, but reading of your experiences will be helpful. Thanks!
 

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I've had a nearly constant pressure type headache for about 3 years now; it's probably due to lupus but cannot absolutely confirm that through any sort of testing. The other types of known headache like migraine and cluster have been ruled out though through neurologist. My headache is all over though and not just one sided...

I do tend to get ear pain the last 3 years too and never had that before. In my case that was due to bacterial ear infection that has visited me on a few occasions now and took a while to properly diagnose the first time especially. I don't think my ear pain is due to lupus - at least not directly.

Your situation sounds somewhat unique though, and given the past history I'm sure you will be seeing the ENT quickly for some of these symptoms and a neurologist would be a good idea as well.
 

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I haven't had earache from lupus, but I definitely have from sinus infections which give me headache, earache, jaw ache etc. Antibiotics clears it up fast. It is usually one sided, and can be pretty fierce.

It sounds like you need to see a doctor pronto to find out what is going on - can you make yourself an appointment ?

feel better soon

raglet
 

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Discussion Starter · #4 ·
Hi! I did see an ENT and neuro about six months ago while I was still "undifferentiated" and started getting tinnitus in my hearing ear. They couldn't offer much help. They're just not sure what's going on except possibly auto immune inner ear disease and the ENT gave me prednisone to keep on hand if I suddenly lose the hearing in my right ear as I did in my left. The neuro thought the symptoms are all disease related and that when the disease is under control, the symptoms would stop. He's right, they did stop, when I went to the injectible MTX, but what I didn't know then was that the disease was still progressing, so even if I don't feel anything, something's still going on. Now that it's confirmed as lupus, the symptoms of headache, jaw ache, etc. haven't changed, just moved to include the right side a bit more.

It seems there's really nothing anyone can do so I'm grasping at straws here trying to tell myself my symptoms aren't necessarily going to cause me great harm. The feelings in the face can best described as a tense/tired feel in the muscles and whatever is being affected has moved around to the back of the head. It's what's going on inside that makes me concerned because I think that's what's causing the headaches. It's a true cause-and-effect from my lupus symptoms.
 

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Hi there.

It is very disturbing to me that when the doctors cannot figure out what is wrong, they say disease related. While many things are disease related, I think that some are not and if you didn't have a disease, they could look at that one individual problem and figure it out. While science only takes us thus far, sometimes it is hard for the doctors to know exactly what the cause is and have to rule out other possiblities. It seems they did rule out other things.

My only other thought was if you can go to another neuro and ENT for another opinion. It might be worth while to have another doctor review things and give their opinion. If it is the same opinion of the other doctors, maybe it can set your mind at ease a little more and cause you a bit less stress. I understand your concerns though.

Wondering too if you have TMJ and that would cause the jaw to hurt, could cause headaches and earaches. Mine causes one side of my jaw to hurt, gives headaches and earaches when acting up. Just a thought.

I also get this numbess sensation that runs down the top of my head down the bottom. No one knows why.

Hope that things start to feel better really soon for you.
 

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Discussion Starter · #6 ·
Hi Paula,

Your symptom of numbness up and down your head sounds somewhat similar to the sensations at the back of my head, and you haven't stroked out, so maybe it's not a major problem.

I have seen two ENTs, the first one was a jerk, but I've only seen on neuro, so that may be my next step. I'll talk to the RD about it since I'll be seeing him soon. I feel quite certain these problems are all related because they all come and go at the same time I'm having other lupus issues, like achy joints and muscle spasms. And they all get better at the same time, usually after my MTX injection.

I guess I just have to get used to various things happening now. I'm also dealing with a minor bladder issue and stomach crankiness that comes and goes. I'm just not used to having so many things wrong with me. It seems I'm just going to have to adjust. That will be a lot easier if I know nothing of the lupus stuff I'm experiencing is life threatening or is going to make me deaf or blind. Oh well, one day at a time, right?
 
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